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Friday, July 23, 2010

Spinal Cord Injury Cure Industry: Part I

I try to avoid writing about the spinal cord injury cure industry. I have strong views about the business of spinal cord injury, none of them positive. My views sharply contrast others who spend much of their post SCI life working toward or hoping for a cure. Let me be clear on one thing: I am not opposed to research for a cure to spinal cord injury. It is a laudable goal, certainly worth the time and effort of scientific researchers. Such a goal should also receive substantial financial backing from the government and private industry. However, I am convinced those with a SCI that have a single minded interest in a cure at the expense of a life, family and career are wasting their time (the archetype being Christopher Reeve). At best, I think these people efforts are misplaced. At worst, I think some medical professionals in the field of spinal cord injury cure and treatment are charlatans that prey on the desperate.

My views as expressed above make some people with a SCI and their loved ones very angry. I do not intentionally want to anger these people—they are just as free as I am to express their opinion. I respect them but that respect is not a two way street. It is not unusual for me to be racked over the coals when I am critical of the SCI cure industry and those that devote their time and energy toward that goal. More to the point, I don’t like being called an “asshole”, a “bad person”, have someone “pity” me, or be considered “narcissistic and bitter” by those interested in a cure. These are direct quotes from comments posted on this blog in 2007—one of the first times I commented about the spinal cord injury business and its larger ramifications. This moral outrage and personal condemnation puzzles me. Let me reiterate: I am not opposed to research for a cure to spinal cord injury. If others want to devote all their time and energy to this goal they are free to do so. If people want to spend a small fortune and go to China for what I consider dubious surgery they are free to do so. I depart from such people in a fundamental way: I have no interest in a cure to SCI. Am I selfish in thinking this way? Yes. In part, at issue is the meaning of the word cure. To me cure would be the eradication of a disease or condition. In terms of SCI, this is not going to happen any time soon, certainly not in my lifetime. Even the most ardent researcher will acknowledge this. Given this, my thinking is why bother getting involved. Is a little more movement or sensation really worth the time and risk or major surgery? For me the answer is a resounding no. I cannot walk but that is hardly a prerequisite for what I want to do with my life. I also have come to conclude that the major problems people with a SCI encounter are social. This more than any level of injury prevents people from leading a rich and full life after a SCI.

I am severely critical of the SCI cure industry and those people who that focus on a cure for three primary reasons. First, these people become media darlings, their lives reduced to nothing more and nothing less than a SCI. This is not only sad but dehumanizing. This stereotype, specifically the paralyzed person that ardently wishes to walk again, is effectively used to raise money (the Reeve Foundation exploited this to an extreme) and deflect attention from the issues that present the greatest obstacles. Those obstacles are the refusal to modify our social environment to be inclusive. It is far easier to donate money, feel good about this and forget that the law requires schools and other public places be accessible. This costs money most are unwilling to spend I in this manner. Current newspaper headlines about draconian budget cuts nationwide to disability services are proof people do not care one iota about the rights of people with a disability.

Second, Americans are not taught about the disability rights movement past or present. As a result civil rights and disability rights are not thought to be one in the same. This is a significant problem. While I can understand why those without a SCI don’t know the history of disability rights in America, I cannot begin to fathom how a person with a SCI would not express a strong interest in the subject. Of those who seem the most resistant to learning about and acknowledging this past are those interested in a cure to SCI. It is as though the efforts of disability rights activists are somehow not relevant. Yet the same people who focus on cure thoughtlessly use the same ramps and elevators activists fought for and enjoy many rights those before them did not enjoy.

Third, the people that devote their energies to a cure for SCI either knowingly or unknowingly accept a negative perception of wheelchair use. I see nothing wrong with using a wheelchair. This does not mean I want to be paralyzed. A wheelchair is an alternate means of locomotion. It is not superior or inferior to walking. It is simply different. People whose primary goal is a cure to SCI don’t accept or get this. Moreover, it appears to me many people that focus on a cure have the luxury of thinking about this lofty goal. By luxury that is they have the financial or familial support to seek out this goal. They are free to spend their money as they see fit. But I draw the line when this goal and its dehumanizing fund raising methods affect others with a SCI. If we allow and encourage the general pubic to donate money to a cure for SCI using dehumanizing images and beliefs how can we expect society to consider use equals, our civil rights the same? And what happens to the vast majority of people with a SCI that do not have financial or familial support? What are their lives like? In a word, grim. Most people with a high SCI end up in a nursing home. This is not a life but in some ways a death sentence. I don’t ever see people who focus on cure talking about those with a comparable injury that live in an institution—and this is the norm rather than the exception. These people, those without resources who have a SCI, are who I worry about and who can benefit the most from an inclusive society that acknowledges disability rights. To them and me a cure for SCI is just not relevant.


jeffreylramsey said...

I Read most of your Blog and had to stop. I'm in a lot of pain most days, the spasms are horrible and the wound care is finally getting better. I will finish reading the rest later. I'm a T-9 Para from gunshot wound. The worst spasms I ever seen is mine and a guy from a Baclofen Pump Commercial My story is I would like to know how you cope most days? I use social Media, when able. Tc Jeffrey Ramsey

jeffreylramsey said...

I forgot to tell blogger to email me. Tc

william Peace said...

Jeffrey, I have none of the problems that can arise from a SCI associated with a gun shot wound. I have no pain, spasms that do not bother me and are actually useful. My skin integrity is rock solid--two small sores in 32 years. I am a lucky man or as lucky as one can be after paralysis.
I wish there was something I could suggest that would be helpful at a practical level with your pain and spasms. Every SCI is unique unto itself and no two people react the same way. This makes treatment complex and good doctors hard to find.

Roy said...

Interesting thoughts on the cure industry.
I do not consider NA medical research in the same way that you do, but definitely consider medical tourism to be both a scam and potentially dangerous.
While I understand why some people choose to focus their lives on a cure for as their personal emancipation from a life they did not plan for or expect, I'm sure they would benefit more learning to live their life in the same way they did before their injury.
I don't mean to suggest that people with an SCI should not devote energy to the pursuit of a cure, just that they shoild not let this devotion rule their lives. There are so many other things worthy of pursuing, like accessibility, mobility, charity and just plain living!
Perhaps the response to your BLOG would be different if you were a little less strident? But then again, I guess bloggers are all about getting a response and causing people to be more introspective. You certainly achieve this if nothing else.

The Untoward Lady said...

@Roy: I wouldn't say say that all medical tourism is a scam or that it's at best dangerous. Speaking as a transgender woman I would like to point out that the best SRS surgeons, bar none, are in Thailand.

william Peace said...

Roy, Someone has to be strident for disability rights. The overwhelming social message that dominates all discourse is the same as it relates to disability--disability is bad, very, very bad. My voice and strident views are an antidote to the dominant sociocultural messages people receive.
I am not opposed to health care innovation from other countries. The USA certainly has no monopoly on scientific advancement. I draw the line at questionable procedures such as those performed in China that are risky and provide small gains if any. Add in the cost, over $30,000, and I consider this a form of economic exploitation.
Untoward lady, You are 100% correct about Thailand and SRS. A friend of mine is writing a book about Thailand lady boys and I am amazed by the results of surgery. It is really remarkable, far superior to the USA.